During the three years her mother was in a nursing home, Gail Simon, of East Haven, was a constant presence at the facility and a tireless advocate for her mother. One matter on which she made herself quite clear is that she didn't want her mom, who had Parkinson's disease, to receive antipsychotic medications.

Simon's mother died late last year, and near the end of mother's life when her symptoms worsened, Simon did authorize the drugs. Again, she remained frequently on watch, making sure that her mother didn't get too much.

Had she not taken an active role, however, Simon said she is not sure what would have happened. She said she knows there are people who are given medication they don't need or that isn't appropriate for them.

"I've seen it probably more often than I'd like to," she said.

Indeed, research shows some nursing homes throughout the state have become heavily reliant on antipsychotic drugs.

While many of these drugs offer important treatment for patients with certain mental conditions, such as schizophrenia, they are frequently used to treat those with dementia.

Experts said using the drugs in nursing home populations usually yields minimal benefits and can carry serious risks. The Food and Drug Administration has warned that the drugs have potentially fatal side effects, including pneumonia and heart attacks, when used in elderly patients with dementia.

Yet this practice continues, both nationwide and statewide.

Connecticut ranked in the top four states nationally from 2005-10 in administering antipsychotics to residents without appropriate diagnoses, and was the highest or second-highest nationwide in antipsychotic use among high-risk residents, federal data show.

Also, a review of federal nursing home data from December, conducted by the Connecticut Health Investigative Team, showed the use of these drugs doesn't affect quality ratings of nursing homes and is often unknown to consumers selecting a home.

To Simon, the numbers aren't shocking, though she says nursing home residents whose families advocate aggressively for them can receive better care. Her mother's Parkinson's symptoms, including difficulty communicating, often seemed to mimic those of dementia, she said. Had she not been there during her mother's care, Simon said, she is not sure what kinds of medication would have been administered.

Families need to be involved if they want to have input into the medication their loved ones receive. Given the limited role so many family members play, "it's not surprising that antipsychotics are over-used," Simon said.

Connecticut rates high

In three-dozen Connecticut nursing homes, at least a third of long-stay residents are on antipsychotics -- yet nearly half of those homes have excellent overall ratings, of four to five stars. Only three have the lowest overall rating. In addition, the state Department of Public Health has rarely imposed more than minimal fines on nursing homes for excessive or inappropriate use of antipsychotics, inspection records show.

Some are working to reverse this drug-heavy culture of care. In Connecticut, for example, health care advocates formed a coalition -- coordinated by Qualidigm, a Medicare quality-improvement organization -- to reduce antipsychotic use.

"It's a big change," Ann Spenard, vice president of program operations for Qualidigm, said. "It's like trying to turn the Queen Mary. It's not going to happen overnight. I believe the state of Connecticut will be successful" in reducing the prevalence rate.

Antipsychotics provide, at best, "minimal benefits" for behavioral and psychological symptoms of dementia, Spenard said. But in recent years, they have become a front-line treatment for agitation, aggression and other behaviors. Alternatives include consistent assignment of caregivers to patients and behavioral interventions to eliminate anxiety "triggers" for residents, Spenard said.

Even with recent efforts to curb improper use, the state's prevalence rate of unapproved antipsychotic use remains high -- 25.7 percent for long-stay nursing home residents, which is higher than 34 other states and above the national average of 23.8 percent.

Of the 42 nursing homes in Fairfield County, 18 had antipsychotic prescribing rates higher than the state and national average for patients without diagnoses. Those in our region with the highest rates included Connecticut Health, of Greenwich, at 35.7 percent, Astoria Park in Bridgeport (36 percent), Paradigm Healthcare Center, of Norwalk, (36.1 percent); Filosa for Nursing and Rehabilitation in Danbury (36.2 percent); and Fairview, of Fairfield, previously Connecticut Health of Southport (44.9 percent).

Nursing home administrators say the rules governing antipsychotic use are too narrow and that the drugs are sometimes needed to keep residents from harming themselves or others. Some also said the CMS data is out of date.

Terrence Brennan, administrator of Fairview, of Fairfield, said, since CMS collected its data, the nursing home has changed names and ownership. Its antipsychotic prescription rate has also gone down, Brennan said, to 30 percent.

He added that about a third of those receiving the medications have schizophrenic disorders or other conditions for which antipsychotics are an appropriate prescription. Brennan said he and Fairview director of nursing Claudia Katz are aware that antipsychotic prescription rates are a huge issue, and it's something they're keeping an eye on.

"Anything we see that's out of the ordinary or an outlier or a trigger, we're looking at it," Brennan said.

The rate of off-label prescribing swings widely -- from the high of 68 percent to a low of about 7 percent. In Fairfield County, the lowest rate was at Smith House in Stamford, at 11.8 percent.

Tatiana Belykh, assistant director of nursing at Smith House, said that facility avoids using antipsychotics as a quick fix to adjust patient behaviors.

"That's the easy way -- if you see a patient that's agitated, just give them a pill," Belykh said. "We don't do that."

Instead, she said, the nursing staff works to figure out what might be causing the patient to be upset.

Are they hungry? Thirsty? Would participating in a craft or activity calm them down?

If all other options fail, Belykh said, the drugs are considered. But even then, the patients' families (or the patients themselves when they are lucid enough) can make the final decision about whether the medication should be given.

Action being taken

Many lawmakers have joined Qualidigm in looking to change the way these drugs are perceived and administered. U.S. Sen. Richard Blumenthal, D-Conn., and colleagues introduced a bill in September that aims to reduce prescribing of off-label antipsychotic in nursing homes by requiring consent from family members; training staff in alternative treatments, and tightening reporting on the use of the drugs.

Federal regulators have called for a reduction in the drugs' use.

Toby Edelman, senior policy attorney for the Center for Medicare Advocacy, said the federal government's encouragement of alternative treatments for dementia is important, but tougher penalties for nursing homes that overuse the drugs also are needed.

"The other piece of this is stronger enforcement," she said. "If they misuse the drugs and have to pay a $139 fine, what do they care? It's the cost of doing business."

A review of three years of online inspection reports shows the Connecticut Department of Public Health routinely addresses findings that nursing homes have administered unnecessary drugs by imposing minimal fines. In only one case contained in online reports compiled by ProPublica did state inspectors characterize the violation as serious, defined as causing harm, and none of the violations was found to place residents in "immediate jeopardy," the highest level of severity.

However, DPH spokesman William Gerrish said the agency is concerned about "the prevalence of antipsychotic medications administered to nursing home residents with no primary psychiatric diagnosis or related conditions" and supports CMS' reduction initiative. The DPH reviews medication use as part of its survey process, he said, and the state's frequency of citing homes for lapses related to unnecessary drugs is higher than the regional or national averages. In addition to fines, the state requires homes to adopt corrective action plans when it finds deficiencies.

Nationally, citations against nursing homes for unnecessarily medicating patients are relatively rare: 1,213 instances in 2012, according to data from CMS. Of those, only 12 were classified as posing "immediate jeopardy."

"Almost everything is considered `no harm,' " Edelman said. "How can improperly medicating someone, with all the risks involved, not be considered harmful?"

The rate of antipsychotic use is not factored into CMS' complex five-star rating system, which ranks homes on nine quality of care measures, including incidences of pressure sores and urinary tract infections. Since antipsychotic use isn't one of the criteria, homes with high prescription rates may still receive high ratings on CMS' Nursing Home Compare website.

Twenty-five of the 36 Connecticut homes with the highest rates of antipsychotic use had high ratings on quality measures. Only two had the lowest rating of one star.

Given all these factors, many believe there's a long way to go in addressing this issue properly. Simon said one possible solution is for family members to increase the role they play in their parents' care. She is still on the family council of her mother's nursing home, even after her mother's death. It's essential that families be advocates on a variety of issues, particularly medication, Simon said.

"The residents have rights," she said. "It doesn't matter if they have dementia. They're human beings."

This story was reported under a partnership with the Connecticut Health I-Team (www.c-hit.org).